infused with music

Infused With Music: Dave Colvin

By Shelby Smoak

After over 30 years earning a living as a numbers guy and working in accounting positions while trying to perform and write songs in the off hours, Dave Colvin, a man with hemophilia A, finally shed that day-to-day job and traded it to focus on his real passion—music.

It was a career move he had put on hold since his college days when he started Illinois State as a music major, but changed because of state funding and the increased availability of jobs in accounting and cash management. But in 2006, Dave started his own publishing company, Arnybarn Music (BMI), and began professionally recording his songs and pitching them to other artists and labels, and he hasn’t looked back since.

Colvin 13.jpg

Dave’s big break came in 2011 when one of his songs, “Gently Falls,” was selected for use in an episode of CBS’s Star Trek: Enterprise. The song aired in Season 2’s second episode, “Carbon Copy,” and can now be streamed on Netflix, CBS All Access, Hulu, and Amazon. Catch Dave’s song in the background at around the 10 minute mark. For Dave, it is an exciting time and a validation of his music. “It is so amazing to think that each month thousands of people around the world hear my voice and my song!” he enthuses. “My quarterly royalty report shows some 15,000 to 25,000 views per website!”

The success continued when another song “You are Living On” was released by Ronan Parke who was runner up on the 2011 season of Britain’s Got Talent. While Ronan Parke’s version differs from the country-infused, laid-back delivery of Dave’s own performances, the emotional tug of the song gets lifted into a pop gem.

The song was born from Dave’s grief at losing his parents within a few months of each other:

Just the other evening

We were talking on the phone.

Your advice was sure and steady

But your voice was not as strong.

Now that body’s finally failed you,

Heaven’s called you to come home.

Colvin 11.jpg

It is at once specific, opening with a clear scene anybody can relate to, yet Dave consciously avoids a strict script after that, assuring that the lines will resonate with just about any listener. “To be successful, one needs to be able to write something that will be universally felt or understood,” he says, the philosophy that likely garnered this song as a hit. “It has been humbling to see the comments [Ronan Parke] fans have posted about how my song has touched their hearts,” Dave says. “It makes the years of trying and getting rejected time and again, all the more worth it!”

Those years, of course, came with the normal obstacles artists face and then the not-so-normal trials of having a bleeding disorder.

Colvin 12.jpg

“Prior to prophylaxis,” Dave says, “I would often get a bleed from performing, usually an elbow from playing the guitar.” In those early years, he remembers going to the hospital for cryoprecipitate before his band performed. Dave continued infusing and performing, especially at a yearly festival in his hometown of Decatur, Georgia. About a decade ago, he had to let the touring go. Things came to a head at one show where Dave tripped on the stage’s drum riser and broke his elbow. “As I age, I do not perform out much anymore simply because it has gotten difficult to even go up a few stairs to get on stage,” he says. “The past few years I mostly record from my home studio in Nashville.”

Full of wisdom and advice, Dave advocates that to be successful in music, three ingredients are required: a love of music, patience and a thick skin, all things he owns in spades. Dave spends his other time as a father and grandfather and is thankful for singing through over forty years of marriage. He’s also working on an autobiography but says he’s only up to 1994 in the yearly chronicle.

While waiting for that, you can enjoy Dave Colvin’s music now at: https://www.arnybarnmusicgroup.com/music

Infused With Music: Emily Champagne

By Shelby Smoak

After attending an orchestra concert in elementary school, Emily Champagne, who has von Willebrand Disease, knew she wanted to play the violin. For the twelve years since that first concert, she has done so and has made it her dream pursuit.

At 23, Emily’s life is taking off. She is recently married, spends quality time with family and friends, enjoys reading and playing video games and holds down a steady job as a grocery cashier. But she pines for her musical break. “I hope to one day get a job as a professional violinist in an orchestra,” she says.

Emily has performed in a plethora of string quartets and chamber orchestras, including the Suncoast Super Strings, conducted by violin virtuoso Itzhak Perlman, who has been the equivalent of a rock star to Emily. “Growing up, I always would listen to the music of Itzhak Perlman,” she states with excitement. “He is an extremely talented violinist, and someone I really look up to!”

When Emily got to perform in a concerto under Perlman’s direction, she was “beyond excited.”

She says, “To be able to perform in front of my violin idol was a huge deal,” and adds, “When I got the phone call stating I was accepted into the program, I remember crying out of happiness. It was such a once-in-a-lifetime experience to be able to work with a world-renowned violinist.”

Champagne, Emily 1.jpg

She has also traveled to Europe with the local youth orchestra and performed in Salzburg, Vienna, Prague and Munich. During high school and community college, Emily served as concertmaster and was appointed co-concertmaster of the University of Central Florida (UCF) symphony orchestra for the 2018-2019 school year.

If you ask Emily about her bleeding disorder, she indicates that it isn’t slowing her down. “VWD hasn’t really affected my music,” she says. “It’s an activity I know I can enjoy without having to worry about my bleeding disorder.” Music helps her escape the challenges of her bleeding disorder.“ To her, it offers a form of expression she can’t find in other places. “You can compose songs that show how you feel, or simply play music to get your mind off of things,” she says.”

Having just graduated with her Bachelor of Music in Violin Performance from UCF in May of this year, Emily’s dream is to now perform in chamber groups and a professional symphony orchestra.

Violin has been a constant in her life and is even something she can lean into if she is having medical issues. So, while Emily may not have everything figured out yet, she is certain about violin: “One thing for sure is I know I’m going to keep playing violin!”

Infused With Music: Maxwell Feinstein

By Shelby Smoak

When I get Maxwell Feinstein on the phone for our interview he is walking the streets of New Jersey on his way to Silver Horse Sound, the recording studio where Maxwell can be found tracking his own music, streaming live music posts on Facebook, or working with other artists who have booked time with him.

Today he has two rehearsals, a bass tracking session, and a mix session. “Tomorrow sees us doing two more recording sessions unrelated to the session previously mentioned and I’ll be meeting with a potential songwriting partner for some children’s music,” he adds. In a world where earning your keep with music has become an almost impossible task, Maxwell, a person with hemophilia, is able to keep things moving.

Maxwell got his first guitar at age eleven inspired by Nirvana’s “Smells Like Teen Spirit,” and the “teen spirit” to play music struck hard. “I had been participating mostly in choirs or theater before this,” he says, “with brief flirtations (weeks of interest at most) on violin, flute, clarinet and saxophone.” But once Maxwell found the guitar, he took school hours to steal away into an unused handicapped bathroom which he transformed into his band room. “People used to use that space as a make-out room,” he says, “and I would just sit there practicing.” Maxwell adds, “If you wanted to get some necking in, you’d have to put up with me practicing” because nothing was getting between him and his guitar.

Now, in addition to running a studio, Maxwell dons a guitar or bass—depending on the need—in a bevy of touring bands: Jaime Della Fave (Jaimerosey), BWQ (or Project BWQ), Terra Electric, The Love Network and Debra Devi.

“My policy is basically that I’ll perform with anyone who asks!” he enthuses. He also writes, performs and records his own music, some of which can be heard on his solo release Round of Sound. In talking about Round of Sound, Maxwell calls it a labor of love with himself and other friends who helped him complete it. “I played most of the instruments save for the drums, and we did it in our rehearsal room just stringing microphones up and grabbing the sounds 60’s style with little regard for sounds bleeding onto the tracks.”

Feinstein, Max 5.jpg

Stand-out track “Mad Dog’s Promenade”, released in 2012, highlights Maxwell’s whimsical style with its off-the-cuff lyrical refrain, “Smile to myself as I walk.” “It’s a song about walking around town, going about my business while musing on how good I have it if I get to go make music when I’m done walking around,” he says of the track. But not all his songs are easy-going tunes. “I’ve written about coping with those I’ve lost,” he reflects, “and I’ve written about loves current and past. I’ll often write about whatever’s interesting to me at any given time.”

And then there is Maxwell’s hemophilia, which, as he says, “visits me when it wants.”

Feinstein, Max 2.jpg

He has lost cartilage in his elbows; played shows with ankle bleeds, knee bleeds and elbow bleeds; dealt with nose bleeds while on tour. “I had a nosebleed from two days before we left on a tour until the last tour day two weeks later,” he says. But it hasn’t stopped him. He takes care of his hemophilia so music can take care of him.

Before ending our interview, Maxwell offers this advice, culled from his own experiences: “Try your best to figure out what makes you happy and what builds community around you and how you can make it grow into something you can be proud of toiling for.” Maxwell has done just that.

Maxwell Feinstein’s music can be found at: http://www.maxfeinstein.com

Infused With Music: Wayne Cook

By Shelby Smoak

With over 40 years of playing music, nobody is more comfortable behind the kit than Wayne Cook. His is a steady rhythm. And his instrument of choice is uncannily fitting as Wayne is the backbone for so much more than songs.

For starters, Wayne, a person with severe hemophilia B, is the current president of The Coalition for Hemophilia B. For another, Wayne is the father of four grown kids and the proud grandfather of three more. Those are a lot of big roles to fill.

Wayne 3.jpg

Wayne began playing music in 4th grade and through school beat his drums in marching band, jazz band, summer camps and band competitions, winning the New York State Class divisions for marching and jazz bands in the late 1970s. A fond memory from this time was when his school won their state championship and the jazz band burst into the Rocky theme song with Wayne pounding out a double drum solo. “In all the places I have ever played, it will never be as rewarding as playing that event because that truly sealed it for me as a drummer,” he says. At home, he listened to the greats: John Bonham in Led Zeppelin, Ringo Starr in the Beatles, and one of his favorites, Neil Peart in Rush.

“I loved listening to these guys,” Wayne says, “because they could put down great thunderous beats or smooth grooves to some of the greatest songs.”

But life got in the way after school and the drums went silent. That is until nine years ago when Wayne dusted off the skins and began sitting in for cover, tribute, studio and original bands.

More recently, Wayne jumpstarted The Bleeders cover band, a group that includes myself and other persons with bleeding disorders as its core: Phil Hardt, Rick Starks, Kevin Harris. “For years,” Wayne says, “I had this dream about putting together a band with people from the hemophilia community.” The Bleeders just wrapped up a 2-night show at The Coalition’s Annual Symposium, but Wayne’s long-term goal for the project is to perform at other hemophilia events and even work toward a recording.

In talking with Wayne, he admits that hemophilia has had its impact on his playing. Two replaced knees and arthritis settling in his hands and legs have kept him from playing as fast as he once could. “Now, I am more about keeping a good steady beat and good grooves,” he says, adding that “playing drums three to four times a week for a few hours at a time has helped me with my joints.” Ultimately, Wayne says he will continue playing and “keep that cool groove” and will always be a “Rocker.” You can catch Wayne playing near his hometown in upstate New York and at The Coalition for Hemophilia B Music Camp in Nashville this summer.

Wayne can be heard drumming in The Bleeders live recordings, available on Bandcamp: https://thebleedersusa.bandcamp.com/

Infused With Music: Katyrien Hall

By Shelby Smoak

As budding musical songbird Katyrien Hall and almost anyone will tell you, “Bleeding disorders aren’t contagious,” but Kaytrien’s enthusiasm and passion for musical theater is.

Only in her freshman year of high school in the remote calm of Maine, she already has a pedigree of performances and a talent to match. “I’ve always enjoyed playing instruments and singing when I was younger,” she says, and after doing her first musical Dear Edwina Jr. in 7th grade, followed by another role in The Wizard of Oz, Kaytrien was hooked. She describes her next achievement playing the lead role Belle in Beauty and the Beast as “one of the greatest experiences of my whole musical journey so far.” She adds, “It made me fall in love with the whole idea of musical theater.”

Hall 5.jpg

One thing that made musical theater especially attractive to Kaytrien is that it was a “much safer place” for her than any other hobby. Kaytrien suffers from von Willebrand disease and platelet impairment and has two siblings with a bleeding disorder. While she participated in volleyball thinking it a safe “non-contact sport,” she still developed bruises and damaged her arms, leading her hematologist to recommend she quit. Luckily, musical theater was there to catch her, but it’s not all safe. “If I am in a scene where someone needs to grab me or do anything aggressive towards me,” she says, “I have to let the bruises come because it’s part of the show. It is hard having to do a scene like that over and over, but I make sure to take care of myself and keep an ice pack on my bruises.”

Let’s hope then her latest role in Hemophilia: The Musical didn’t give her any bruises. When she heard about the opportunity in 2018, Kaytrien filmed almost 100 takes of her audition video before feeling satisfied enough to send it along to Breaking Through, the group coordinating the awareness-raising event. Backed by funding from BioMarin, Hemophilia: The Musical was a work in art therapy meant to bring teenagers together to share their stories with each other as well as with a larger audience.

For her part in the musical, Kaytrien played a young girl afraid of bullying because of her bleeding disorder.

Hall 1.jpg

“She is shy and doesn’t want anybody to know about her disorder, Kaytrien says of the part, “but she eventually overcomes the fear and shares her story with others.” Certainly, the musical’s message is one many in our community can relate to.

Now back at home, Kaytrien is practicing alto sax, performing in chorus and jazz band and taking a class in musical theory and composition. She labels the ability to perform “so satisfying” and “one of the greatest accomplishments anybody can have.” If you have a bleeding disorder, Kaytrien advocates, “Don’t let it hold you back. Even if you have to do things a bit different from others, try your hardest to do what you enjoy and be proud of it.” True to form, nothing seems to be holding Kaytrien back. “Music has helped me through every rough situation I have been in,” she says. “When I am 20, 30, or even 85,” she adds, “I intend to keep music in my life forever.”

To watch the performance of Hemophilia: The Musical, visit: https://www.youtube.com/watch?v=dGWqxEalxKQ

Infused With Music: Shawn Decker

By Shelby Smoak

When Shawn Decker finally finds some time in his busy life to chat, it is the Monday after the wildly fun 80’s Prom Dance Party event he organizes and performs at in his hometown of Charlottesville, Virginia.

Decker 5 adjusted blue4.jpg

Not unsurprisingly, this 40-something hemophiliac is suffering from an ankle bleed, the battle wounds of being married to music. “I can deal with this,” he says, because ultimately for Shawn music is beneficial. It heals and “brings you peace of mind and calms you down.”

Shawn is perhaps more widely known through his bizarrely funny memoir My Pet Virus wherein cutting humor he adopts his HIV—a result of tainted plasma products—as a pseudo-pet and narrates how to move forward in life and not dwell on the past. It also is a sort-of love story where his future wife Gwenn plays a central role. Additionally, Shawn is a contributor to POZ magazine where he continues to be a vessel of humorous support to the HIV community.

But Shawn is also a musician. When he was a kid, he fell in love with 80’s synth-pop bands like Pet Shop Boys, Eurythmics, A-ha, and especially Depeche Mode who Shawn got to meet as part of the Make-a-Wish Foundation. Since then, Shawn has channeled that passion into cover songs and original music which he files under his band name Synthetic Division.

Decker 5.jpeg

The humor that infused My Pet Virus is making its way into his music. Take for example the morbidly funny “I Wanna Be Cremated,” Synthetic Division’s spin on a classic Ramones song: “Twenty, twenty-four hours to go / I wanna be cremated / Just put me in the fire / turn me into smoke / you don’t have to worry / for once I will not choke.” Who wouldn’t die laughing at that? (Two can play at this morbid humor game, Shawn)

This kind of humor wasn’t always the case with Synthetic Division, a band that is now approaching its 20-year anniversary. An early track “Borrowed Time” from the album Bleeding Heart Cadaver darkly asks, “Am I on borrowed time, do I have much time left? / Is it not sinking in that I am checking out.” On their debut album, Tainted Goods, Shawn croons in “The Rain,” “Fade away / Fade away / Who’s going to fade just like the rain?” Even Shawn admits his music is taking a turn and is now more optimistic. “I feel I got the dark stuff out early,” he says, “and have started letting the lighter side come in,” adding, “I’m not afraid to sound cheesy.”

In talking with Shawn, he continuously reaffirms the importance of music in his life and its ability to create a continuous “safe space” which contributes to better moods and a general feeling of fulfillment.

Decker.jpg

He equates writing songs to going back to being a 13-year-old kid in his bedroom, “listening to music, getting my mind back on track, and getting away from HIV.” In contrast to his more lighthearted and less serious approach to music, Shawn is taking his health more seriously. For most of his adulthood, he didn’t have many bleeds, but in the last decade this has changed, and more bleeds equal more treatment center visits for his necessary infusions.

So finally, Shawn “took matters into his own hands” (literally) and began self-infusing. He is also embracing care for his mental health, a thing that he treats, again, with his music—loading old patches on his drum machine, tweaking sounds on his computer synths, and doing 80’s prom gigs. Ultimately Shawn is making the songs he wants to hear and to him, that is the sound of happiness.

Synthetic Division’s entire catalog can be found on Bandcamp: https://synthetic-division.bandcamp.com

Infused With Music: Elizabeth Vansant

By Shelby Smoak

While she may be a bit too shy to take the stage with her musical talent, Elizabeth VanSant is not shy to bring music therapy to people’s doorstep.

Elizabeth Photo 2.jpg

Along with the rigorous demands of a college degree, Elizabeth recently finished her B.M. in Music Therapy at University of Kansas with over 1,200 clinical hours completed. She pulled up her mid-western roots and struck out for the rainy marine climate of Seattle where she has already started working.

“I’ve actually gotten three music-related jobs since moving to Seattle six weeks ago,” Elizabeth explained. One of the jobs includes working with special needs children and young adults, holding weekly social groups and using music to improve their social skills. Another job includes working with infants and toddlers as a music specialist. And a final job offer is so new she is still awaiting details. Certainly, it’s an exciting time for this twenty-something college grad.

Elizabeth’s passion for music started with dance, but the perils of having hemophilia B soon took away that opportunity. “From all the ballet, tap and jazz I was doing,” she says, “I got a stress fracture in my left ankle and was unable to continue dancing.” Enter then the piano, which she has now been playing since third grade. Along the way she has learned flute, guitar and a variety of percussion instruments. She also loves to sing. All these things are made obvious when watching Elizabeth play: she can fluidly sight read music without missing a note and can match the vocal with near pitch-perfection on any song.

After high school Elizabeth sought an avenue to have a career in music and began studying music therapy. She shares, “I immediately connected with it because I realized that I had used playing piano to express my emotions when learning how to self-infuse. I thought to myself, if I can help people with music in the same way that it helped me, I would be incredibly happy.”

Music therapy however, isn’t just listening or playing music. “While listening to music when you’re having a bleed or are not feeling well is therapeutic, it is not music therapy,” Elizabeth says.

Music therapy is working with a trained professional and using music as an intervention tool to accomplish a specific goal for healing or personal development. All persons receiving degrees in Music Therapy must attend an approved university and, before they can practice, must be board certified by The American Music Therapy Association.

The American Music Therapy Association’s website details several of the therapeutic advantages that music therapy can provide: alleviating pain, enhancing memory, managing stress, promoting physical rehabilitation and others. Therapy is also proven in treating conditions such as Alzheimer’s, autism, pain management, mental health issues and PTSD. Moreover, music therapy can be covered by certain insurances: Medicare under their Partial Hospitalization Program (PHP); Medicaid in certain states; and private insurers like Blue Cross Blue Shield, Aetna and Cigna.

Elizabeth Photo 5.jpg

Elizabeth’s own struggles with hemophilia, she says, likely pushed her into music therapy. Because of her bleeding disorder, she gravitated toward playing more guitar and piano as she was growing up. “It was a release for my anxiety,” she says, adding “and playing piano and guitar certainly helps veins grow right before infusing.”

Now, hemophilia is only sometimes limiting: “One of my target areas is my right shoulder muscle, so sometimes it can be difficult to play guitar, which is the easiest way for me to accompany myself during music therapy sessions.” But that isn’t stopping her. “Thankfully, this hasn’t happened in a while, but it’s something to always be mindful of.”

In closing, Elizabeth advocates for persons to incorporate music in their lives. “Music can help you be more self-aware,” she says, “and it can be an excellent way to express, and even redirect, your emotions.”

In addition to her work in Seattle, Elizabeth takes her passion on the road, running Music Therapy workshops at various hemophilia events and sometimes overcoming her shyness for a few cameo appearances in The Bleeders, a hemophilia-inspired cover band.

More information on Music Therapy can be found at The American Music Therapy Association’s website: https://www.musictherapy.org/

Infused With Music: Trevor Graham

By Shelby Smoak

Bands like Insect Warfare, Napalm Death, 80K, Captain Cleanoff, Deathtoll and Extreme Noise Terror may not be on repeat on the typical stereo, but these heavy-metal/punk bands inspire New Jersey rocker and hemophiliac Trevor Graham to perform with his own grindcore outfit, Organ Dealer.

Trevor OEF.jpg

Grindcore fuses the fast and aggressive music of metal with the brief song length and political discontent stylings of punk. Organ Dealer began with two of Trevor’s friends in 2014, when Trevor donned the bass guitar to add the undercurrent and punch such music depends upon.

Trevor started playing piano at five before joining his school band and making noise on trumpet, flute, clarinet and trombone. But at thirteen he found the guitar and hasn’t looked back. It was probably a good decision since that passion has carried Trevor all over the US and the world. In addition to US tour dates, Trevor has been lucky enough to play shows in France, Germany, England, Wales, Switzerland, and even the Czech Republic, and is currently booking more dates in Europe as well as Australia.

Trevmerica.jpg

In talking with Trevor, he recalls a high point in his life when playing the Obscene Extreme Festival 2018 in the Czech Republic. “Never in a million years did I expect to be at that fest,” he says, “let alone sharing the same stage with some of the bands I grew up idolizing. The crowd and energy were insane and the biggest event we’ve ever played being it’s the largest grindcore fest in the world.”

Trevor is also lucky that his hemophilia hasn’t held him back. In fact, he remarks that the only annoying thing about his hemophilia is having to cart around his portable sharps container.

“So the loss of some luggage space has been the biggest inconvenience thankfully so far. But he adds that “the occasional conversation reassuring people you’re not shooting up dope in the van” is also a concern for this “legal” intravenous drug user.

Ultimately, music means everything to Trevor. “Everything else I do throughout the week is just so I have the means to do this,” he enthuses. “There’s not much I love more than playing live music and recording.” And for the budding musician out there, Trevor has this advice: “Do it. I am of the firm belief everyone should be playing music at some level. It’s very important to life. Plus, if you’re someone who gets bleeds often it’s not like you’re not going to be sitting around a lot - pick up an instrument and make that time productive!”

For passionate music lovers, Trevor has this advice: “I encourage all [persons with a bleeding disorder] to at least listen to as much music as you can. No matter how you’re feeling, music can always help make things better.” So, drop the needle. Listen to music. Go over to Spotify or iTunes and listen to Organ Dealer and feel better!

To hear Trevor’s song, visit: https://organdealer.bandcamp.com